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donwilin

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 1. When you were growing up in the 1960's/1970's how did people treat people who were on the autistic spectrum?
 
In the 1960s, those with autism were usually labelled psychotic.  In the 1970s the same children were usually labelled disturbed.
The treatment for psychotic children was essentially to inform the parents the situation was hopeless... essentially they were saying these toddlers were severely mentally ill, essentially that there was nothing could be done.  Generally, institutionalisation was the expected norm.  Large Victorian institutions weren't closed down till the 1970s-1980s.  Once children were labeled disturbed, the general approach in the 1970s was Freudian, with an emphasis on bonding.  Holding therapy was big in the 1970s as were play therapies.   By the 1980s these were replaced by  things like ABA.  If you were labelled disturbed you were still expected to be capable of some learning and there were schools and institutions specific to 'disturbed children', many of whom today would be labelled autistic.  I grew up constantly threatened with being institutionalised and the approach in the school given I was labelled diturbed and my mother had threatened to 'punch my teacher's face in' if she was called in because of me (hence her method of getting me mainstreamed was the 'dump and run' approach), but anyway, the general attitude was to avoid confrontation where possible and if the child was harming others, to remove them.  I was stood in the rubbish bin, had chalk and the duster thrown at me by the teacher and was made to stand outside my classroom one year for around 1/3rd of that school year, largely due to a Tourette's tic being attributed to my 'disturbed' label together with no attention span and a severe auditory processing disorder none of which endeared me to my teacher.  The thing about the disturbed label is it tends to blame the child, as though the child doesn't 'care' enough to get over or challenge their issues.  In a way, this worked for me as I fought like hell to both live up to low expectations and then at other times to rebel against their assumptions of incapacity.  In that process I learned many adaptations that work for me today. 

 
2. I read your story and I noticed you mentioned you were allergic to Milk,Dairy, Gluten and Salicylate. How did you find out eventually that you were allergic to them things? Is your Autism allergy induced?
 

I have been referred to as a case of 'allergy induced autism' however I believe my allergies and intolerance's were part of having two untreated immune deficiencies and the impact of an untreated co-morbid mood, anxiety and compulsive disorder on progressively impaired gut and immune function with progressive toxicity effects.  When this stuff happens in infancy, normal brain chemistry, normal development of neurological integration, and normal information processing become pretty unlikely.  There are others in my family diagnosed with Dyslexia, Bipolar, Anxiety disorders as well as a very strong history of Coeliac and Colitis and two people with Crohns.  There is at least one other with an auditory processing delay, two diagnosed with Aspergers and one other diagnosed with Autism who also has Tourette's tics.  So, gut and immune challenges are PART of my package but clearly there's many other things going on that contributed to my autism.

 
3. I believe you have a famous book 'Nobody Nowhere'. Can you tell us a bit about what's it's about and what year it came out? Also, how did it come to be left behind in the United Kingdom?
 

Nobody Nowhere was written in 1990 and came out in 1992.  It was an international number one bestseller, with over 10 weeks at number one on the New York Times Bestseller List and today published in over 17 languages throughout the world.  It was the second published book by a person diagnosed with Autism but was the first one to reach the mainstream public (Temple's book was in academic/educational field rather than sold in mainstream bookshops), hence it popularised autism and exploded lots of the existing stereotypes, contributing to big changes in diagnosis and treatment, including some of the increased diagnosis of those who'd normally have been outside of the stereotypes. 

It covered the loss of my main carers are gone when my grandfather died and my grandmother was sent away. Now, left in a wild, violent, obsessive and alcoholic atmosphere the seemingly deaf, somewhat 'psychotic' and disturbed I is put on course with the goal of transforming meinto a pretty and perfect dancing doll.  But inside of me there were other people I had collected along the road to survival; Willie who was like a civil rights activist on steroids and the smiling facade of Carol.  Carol played the mother's doll to protect the soul of the real Donna. Intertwined with Willie's violent and defensive outbursts and paranoic protection and my often bizarre and quite Autistic responses and behaviours, Carol, behaved like people on TV sit-coms, went to school,even went through the motions of 'friends', and develops a broad range of mimicked speech, stored phrases and charicatures, saving me from a life in an institution and often from the very real threat of . As the teenage years approached Carol and Willie fought it out for control of the body with the real Donna on the sidelines as the lot of us drifted into homelessness, poverty and domestic prostitution passed from stranger to stranger. After an attempted I fell into the care of a psychiatrist and went on to get a university education. But knowlege is not wisdom and without independence skills, I followed a stranger across the ocean where, on arrival, he abandons me to an itinerant bag-lady existance throughout Europe. This second journey began with a man who would change me life and sense of self forever as I met and fell in love with a real life 'mirror'with the same challenges as my own and, later faced with the loss of this first deep love, went on a desperate and dangerous quest to find out 'what kind of mad' I was in the hope there was hope I could change it and as a result found out I was Autistic; a realisation that ended up changing the entire field of Developmental Disabilities forever.

The book came to be left behind in the UK in a tea chest with my belongings which I intended to have sent over to me later, a copy of it was left with the original child psychiatrist who read it who then passed it on to his mentor, who then passed it on to her publisher, who then passed it on to a literary agent, and from there I got the news it was going to be a bestseller.  These people didn't consult me till the end as I had essentially abandoned the manuscript after this psychiatrist read it.  I wrote it as an attempt to find hope in order not to .  It was never meant for publication.  It was a matter of agreeing to the pursuit by others to have it published.  I decided the use of it to others was more important than my own humiliation or privacy, especially as I was on the verge of discarding my physical existence through anyway. 


4. When you got out into the big cruel world before you found your sweetheart Chris how did you find it?
 

I am the child of a dysfunctional family ted by and alcoholism.  I was taking myself to the park at age 3 and coming home when it got dark.  I had moved into my neighbours house most nights of the week by the age of 8, got myself a foster family at 13 and had left my family permanently by 15.  As for the big cruel world, I have never had 'protection' so I do not know its loss.  I've known homelessness, which is cold, hungry and at risk.  I've known living with men in exchange for somewhere to live.  That felt like prostitution, exploitative, confusing.  I've lived independantly, in poverty, lack of food, everything burned, constantly flooding my flat, having my utilities constantly turned off and unable to discuss with the authorities how to get them back on, having no sense of money or social safety, abused because my language was so dysfunctional people though I was mad, struggling to understand

 
5. Do you dislike being labelled the autie? Why? Do you think people should look at us as a person rather than a group of people as a spectrum for our additional needs? Mainly because autism/as effects all suffers differently.
 

I'm a person whose personhood alters the expression of my autism, how I challenge my limitations or embrace them will depend on my own personality makeup and experiences, the Donna-ness.  Similarly, the autism has been a classroom that taught me much, philosophically, spiritually, about difference and equality, about resilience, adaptation and the essential basics of a shared humanity with all others with their own collection of differences.  My autism often constrained the expression of my Donna-ness, but also taught me that a tree still grows around barbed wire.  My limitations now are small, but before were huge.  I have an immature nervous system I can only babysit but sometimes I want far more inclusion, have far more passion, than my nervous system can withstand.  I have a great desire to connect with people but an auditory and visual processing disorder puts time limits on that, forces me to educate others so we can stay involved. 

I think people should always be seen as their personhood as well as their system... the idea that autism is self is like saying that autism IS my personality.  Well I'm artistic, vigilant, idiosyncratic, solitary, sensitive, self sacrificing and I'd have been all these personality traits without my autism, my autism merely puts their volume up.  And autism is not my entire range of experiences... it was a stranger at a bus stop from whom I picked up an interest to sketch trees, it was the fact I had a green fluorescent ball at age 2 that gives me my fascination for things green and fluoro... not autism.  Autism isn't my entire world of experiences and personality, autism doesn't make me smile at the smell of straw or love the feel of patent leather, but being an artist does and being an autistic artist maybe heightens those experiences, but without early straw and patent leather experiences, no amount of autism would have lead me to those parts of my personhood. 

If one got to know my autism too much, one would lose the Donna-ness.  If one sees only the Donna-ness, similarly, there's the danger the autism and its special requirements are trodden upon, leading to chaos.


6. How and when did you start your music, writing, art and sculpturing career?

I always had music in my head, always. 
I always loved sounds, beads, wind, rocks, gravel, splashing....
I first played piano at 14, I sat and moved my fingers to the music in my head and they played Tchaikowski's Sleeping Beauty Waltz.
I then composed two short classical pieces and, terrified of this 'ability' then never played again till age 19.
At 19 I wrote several classical pieces on a piano I bought myself.
At 22 I wrote around 10 songs, many of which feature on my two albums which are on www.donnawilliams.net .
I've written over 100 pieces and improvised new ones daily which are never taped or written and simple 'gone'.

I couldn't produce anything original as a child until I got a typewriter at 9.
Then I typed letter strings (terrified and took many months to dare this).
Then I recognised letter repetitions and realised these made words like bobobobobob
Then I wrote short three letter repeated words.
Then I wrote words that had emotional/sensory impact for me
By age 11 I wrote my first poem
By age 13 I wrote several poems.
I hid them all, terrified to have this 'ability'.
At 17 I burned all my poems.
At 18 I re-entered education and learned to dare impersonal, academic writing.
At 22 I started writing poetry.
At 26 I wrote Nobody Nowhere.
After that I wrote 11 more books, nine of which are published, and this year wrote 4 films, the first of which is the film adaptation of Nobody Nowhere, set to film in 2006.


I sculpted one thing in childhood, age 12, it was a mouse.
Upon someone noticing it, I smashed it up, terrified that making or doing anything would invite 'invasion'.
I watched children use clay when I was 13 and desperately wished to sculpt but couldn't dare.
I finally sculpted at age 32 and my life sized sculpture was my third piece.

I was left paints at 13 and painted three pictures, all of which I then painted over in black to hide them and hid them in the roof void.
I was terrified of people seeing or commenting on or joining me through anything I did or produced.
At 13-16 I began to do little cartoons.  At 17 I burned them all.
At 26 I got paints and did around 10 paintings, all of which I gave away.
I then didn't paint again till 36.  Then I produced 4 paintings, then stopped when the paints ran out.
After some time I continued.  I am still painting and sell my works internationally.

 
7. Which places (organizations)  have you been to when you've been a speaker? Name them if you can remember for us.
N/A
 
8. It's good that you've found a great guy who will support you through all the autistic mishaps. How did you meet the lovely Chris?

He was in an upstairs toilet.  I was downstairs in my friends house.  He came down and I found I didn't want to run.  I instantly wanted him to stay and stay and stay, which was absurd and unheard of for me.  It so shocked my friend that she later arranged for him to meet me again.

 
9. Which country that you've spoken in would you say understands autistic spectrum disorders best?

All countries have their challenges.  The Italians have embraced FC wonderfully, helping many non-verbal people to have communication through typing.  The French had some great integration programs with autistic children in mainstream where they joined the classes they could and returned to their own unit for other classes.  The Japanese struggle more with individuality but work well providing highly structured programs for sensitive people who enjoy those.  The Italian's tend to pray and gush a lot which I don't think is good for those with a lot of Exposure Anxiety.  The English seem to too blindly follow the American's infatuation with the voyueristic approach of ABA and I think play therapy has incarnated into Floor Time which is good as this is an approach that is user friendly for those with limited auditory/visual processing who have good kinesthetic learning and are good hands-on discovery learners.  The Aussies are sometimes pretty innovative in creating individualized programs but culturally they are geared to respect eccentricity and individuality more than some cultures.  Those in India and Indonesia are working with very little resources and struggling against much cultural taboo and I think they are being innovative to look at what they can do without buying into expensive US programs. 


 
10. And finally. What are you hoping for the future? Any plans? Any conferences coming up you're speaking at?

I'm in NZ Jan, Japan in March, Singapore in May and UK May-June.
I'll be involved with the film project of Nobody Nowhere in 2006 and hopefully it may come out in 2007.
I run a writer's group and hope that brings success to the other writers who are evolving through that group.
I hope www.auties.org gets a lot more people listing their skills.
It currently gets around 1000 people viewing the site each week.
When the film, Nobody Nowhere comes out, this could dramatically increase.
I'd love to see home grown groups start so people can skill-share and form small co-operatives, possibly recruiting an autie-friendly non-autie here and there to help them get their skills and products out to the world.  www.auties.org is a start.